Skip to comments.End-of-life care: Pain control carries risk of being called a killer
Posted on 04/29/2012 4:46:29 PM PDT by Brian Kopp DPM
By Kevin B. O'Reilly, amednews staff. Posted April 16, 2012.
Three decades after hospice emerged as the standard of care for terminally ill patients, the end-of-life treatments that palliative medicine physicians provide are frequently referred to as murder, euthanasia and killing.
More than half of hospice and palliative medicine physicians say patients, family members and even other health professionals have used those terms to describe care they recommended or implemented within the last five years, according to a nationwide survey of 663 palliative care doctors in the March Journal of Palliative Medicine.
Common palliative care treatments such as the use of opiates, sedatives and barbiturates to control pain and other symptoms are enough to draw accusations of murder and euthanasia, the study said. The troubling survey results come nearly six years after the American Board of Medical Specialties approved the hospice and palliative medicine subspecialty certification, and 30 years after the creation of the Medicare hospice benefit.
Nearly 1.6 million Americans received hospice care in 2010, up from about 25,000 in 1982, said the National Hospice and Palliative Care Organization. And palliative medicine has made its presence felt in hospitals, with 85% of 300-plus bed hospitals boasting palliative care teams, according to the New York City-based Center to Advance Palliative Care.
Yet the growing use of hospice and palliative care is creating more opportunities for misunderstandings, experts said. New developments in end-of-life care aggressive pain and symptom management (even to the point of unconsciousness), along with a greater willingness to withdraw advanced, life-sustaining treatments such as mechanical ventilation, dialysis, and artificial hydration and nutrition still strike many people as wrong.
The surveys findings highlight the gap between the well-established ethical and legal boundaries that demarcate acceptable end-of-life care and the understanding of patients, families and other members of the health care team, experts said.
Its alarming, said H. Rex Greene, MD, a practicing oncologist and palliative medicine specialist in Lima, Ohio. To accuse legitimate palliative care physicians of euthanasia and murder is a horrible mischaracterization of whats done to relieve symptoms at the end of life.
Twenty-five of the physicians surveyed said they were formally investigated by their institutions, state medical boards or prosecutors, with about half of those cases related to the use of opiates to manage dying patients pain. Nearly a quarter of the investigations were related to the use of palliative and sedative medications when discontinuing mechanical ventilation. An additional 8% of the investigations were for palliative sedation the practice of sedating to unconsciousness terminally ill patients who have severe, refractory pain.
All of these treatments when conducted with the consent of patients or surrogate decision-makers and implemented with the intent of alleviating pain or other symptoms in terminally ill patients are broadly accepted as ethically and legally appropriate, even if they have the secondary effect of speeding the dying process.
Physicians have an obligation to relieve pain and suffering and to promote the dignity and autonomy of dying patients in their care, says the American Medical Association Code of Medical Ethics. This includes providing effective palliative treatment even though it may foreseeably hasten death.
Although none of the physicians investigated was found at fault, most reported worry, anger, anxiety, isolation, depression and difficulty working as a result of the ordeal. Euthanasia accusations whether voiced in the patients room or in the courtroom could have a chilling effect on physicians treatment of dying patients symptoms, said John G. Carney, CEO of the Center for Practical Bioethics, a Kansas City, Mo., think tank that works to improve end-of-life care.
Im deeply concerned that if we dont pay attention to the message in this article, we are going to be dealing with this issue of physicians who are reluctant to do what they know to be right because they are afraid of what people will say or that someones going to investigate, said Carney, a former hospice executive director.
The distinction between aggressive pain control or the withdrawal of life-sustaining treatments and euthanasia is still lost on many patients and families, physicians said.
These misperceptions are really pretty hard-wired and difficult to eliminate, said David Casarett, MD, chief medical officer of the University of Pennsylvania Health Systems hospice program in the Philadelphia area. Believe me, if there were an easy way to communicate these issues, then we wouldnt have highly qualified physicians called before medical boards to explain their actions. To some degree, this is a cultural change. Were far ahead of where we used to be 20 years ago. On the other hand, we cant wait another 20 years for these things to go away.
Doctors who care care for dying patients should take into account the publics lagging understanding of end-of-life treatments, take time to explain their intricacies and make use of ethics consultation services, said Porter Storey, MD, executive vice president of the American Academy of Hospice and Palliative Medicine.
When I started training in this area 30 years ago, it was a rare thing to remove a feeding tube because nobody lived long enough to get that sick, said Dr. Storey, who practices outpatient palliative care in Boulder, Colo. Now many people are living until they are extremely debilitated on life support. And if you work in an ICU, you want to sit down and take time and talk to people, but when its happening every day, its hard to remember sometimes that the public didnt get informed that things have changed.
Yet confusion about end-of-life care is not limited to patients and families. A majority of the doctors surveyed said that other physicians or health professionals at times characterized their palliative care treatments as murder, euthanasia or killing.
As end-of-life care has become more specialized, the gap between what palliative care specialists see as appropriate care and other doctors perception of those treatments has grown, physicians said.
Those of us in palliative care and hospice dont think that much about putting a patient on a large dose of an opioid like morphine. We do it all the time, and we see patients do well, said Dr. Casarett, associate professor of medicine at the Perelman School of Medicine at the University of Pennsylvania.
Recently, a patient dying of cancer enrolled in Dr. Casaretts hospice program after deciding to stop chemotherapy treatment. The oncologist caring for the patient was upset and talked with Dr. Casarett, saying that the combination of stopping curative treatment and using high doses of opiates was wrong.
He said, We might as well just be walking away, and we might as well just shoot [the patient] now, Dr. Casarett recalled.
It still stings to hear that, he said. But Dr. Casarett takes solace in knowing that he is doing right by his patients. I tell other physicians that this is the standard of care, and that these sorts of medications and interventions are safe and effective.
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More than half of palliative care doctors have been told the care they recommended or provided is murder, euthanasia or killing. The frequency of such accusations varies by source and at times includes other doctors.
Patients friend or relative: 59%
Physicians friend or relative: 25%
Another physician: 56%
Another health professional: 57%
Source: Prevalence of Formal Accusations of Murder and Euthanasia against Physicians, Journal of Palliative Medicine, March (ncbi.nlm.nih.gov/pubmed/22401355/)
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That was in the Pittsburgh region. I've had patients or family members who were told the same thing here in the Johnstown area. The "catholic" physician who treated my friend Fr. Gerard told me that IVs were "against hospice policy" as they "only prolonged the process."
When my father in law was admitted to hospice care, their default order was no assisted hydration or nutrition. No one in our family told them that, and we had to specifically countermand that order.
When my mother in law was finally admitted to the in patient hospice unit in the last 48 hours of her life, her IV came with her from home. The hospice nurse made my wife feel guilty for requesting it. When my wife asked how often this nurse dealt with IVs, the nurse rolled her eyes and huffed, "We never do IVs here!"
Its going on every day across the country.
Thank you very much! I have bookmarked this thread for future use as a reference regarding euthanasia.
Thank you, wagglebee.
Job well done. God bless.
Good job, good post! Thank you.
They don’t die under Hospice care. For example, when you admit a pt with Alzheimers , guidelines state that they must be unable to communicate in a meaningful way, can’t perform any ADL’s for themselves, etc. I would argue that is a little too late to get the full benefit of Hospice. Hospice is focused on the pt, but also on the family. And to me if you wait too late the family doesn’t bet the benefit of Chaplain services, social services such as help planning a funeral if necessary, getting help with food, transportation to Dr. visits, etc. However, most companies want you to admit them when they are first diagnosed and sometimes these individuals are still able to drive, etc. But the longer they are on service the longer you can bill Medicare. And see that is what I will not do. In Hospice, the nurse is also a case manager. That makes he/she responsible for who is admitted/discharged. So with my last job, as I said before, I came in and inherited 15 pts from the previous nurse. I could have discharged probably 11 of those pts if I had gone strictly by the book. However, I’m not ashamed to say I had a married couple who had dementia, one being worse off than the other, but they desperately needed the aide services of bathing and dressing and fixing meals everyday so I made the decision to leave the one on service even though that particular pt could have been discharged. So you see, it wasn’t about bringing about anyone’s death, it was about helping with quality of life and things we take for granted such as being clean.
But I would say the majority who are not in the field and are strictly looking at the bottom line want to keep pts as long as possible and have as many as possible even when not appropriate.
Anecdotal evidence is simply not very reliable.
>Unfortunately, every patient receives morphine and haldol in the pack of meds prescribed to every patient admitted to hospice and it is used quite frequently even for those patients not expressing concerns of pain or showing signs of agitation.<
You are correct about the kits of medication. They are a crisis medication kit that a nurse will order if she believes the time of death may be approaching. This is not something you order and take into the home immediately upon admission unless that pt is close tho the dying process. Usually you have a standing order for this kit which usually contains aspirin and tylenol supp., haldol, ativan SL, scopolamine patches or atropine drops, phenergan supp., etc. In order to get roxanol you have to Ho and get a script from the doc. Roxanol is not given until the pt is actively dying.
I realize that you speak to a lot of people in the Hospice or medical field and again I’m not trying to belittle anyone’s experiences. But a lot of people are in the field that never step one foot inside a home of a person dying and actually see what happens day to day with pts.
I would argue very few physicians even in a hospital setting have a tally been with their pt when they pass. Believe me I have had to “advocate” for my pts with some of these Docs with no disrespect, only know about the dying process from something they read in a book.
She was in the home for a little less than 1 year and before that time, lived in a house on the front side of our property for 6 years. She was under hospice care for about 6 weeks. I am not arguing with you, I just don’t feel something is right about making zombies out of so many patients.
I am Catholic myself so I understand exactly how important this is. Believe me when I say, people have ample time to prepare before the actual dying process begins. Re read my comments, I am talking about family members who normally wouldn’t tell mama they loved her like they should, out of guilt, want to keep mama awake so they can tell mama how much they love her to clear a guilty conscious. Seen it all the time.
The natural dying process, that usually takes place in the home, and that I have had the privilege of experiencing, is a very spiritual, life changing experience. When you get the pts pain and restlessness under control, its amazing the things you get to witness. Almost always, they will start to talk about taking a trip. They will almost always talk to loved ones who are already deceased. A lot of times they’ll be talking to them with a big smile on their face. They’ll start to talk about going home. That one always amazes me. They never call it heaven. They always say home.
This is why sudden death is so awful. You don’t get the chance to go back over your life, make peace with God and your family and friends and make the transition from here to eternity. It’s a blessing to be a part of, even though it is also incredibly sad.
I did IV’s all the time for dehydration. If the pt has a picc line or a port placed, you can teach the family very easily how to administer IV fluids for hydration. However, I refer you back to my precious post regarding hydration during the dying process and how counterproductive, even harmful it is.
What anecdotal evidence? Are you suggesting what I have said is not reliable?
Its not always counterproductive or harmful. Sometimes it is just ordinary care, especially for those whose primary problem is an inability to swallow, such as in advanced Parkinson's, stroke, GI cancers, etc..
"Nothing out, nothing in."
If the patient is not producing urine and the lungs are becoming overwhelmed or generalized edema is occurring, yes, IV hydration is counterproductive, even harmful. But in the absence of these, with normal urine output and no symptoms of fluid overload, I can't see how a simple IV can be considered counterproductive or harmful. In my mother in law's case, having that IV meant she could receive the properly titrated amount of morphine in the last 48 hours to ease her breathing. She was not able to swallow at that point, so the liquid morphine was not very effective and the MS Contin was out of the question.
Frankly, there are times when IV hydration is integral to pain control, as dehydration exacerbates so many end of life symptoms. Or at least that's what I'm being told by a number of pro-life hospice nurses, administrators, and medical directors, and what I observed personally as described in previous posts.
I’m saying that one person’s experience is simply that.
The Haldol in my dads case was PRN. When the time came I used it. The Morphine? He had been on it almost a year before Hospice that and Hydrocodone due too ongoing Chemo treatments. I knew better than stop the Morphine and Hydrocodone and gave it pill form as long as he could swallow. Then it went liquid.
In our not so distant past about three decades ago persons who chose to die at home were sent home with a lot more and a lot stronger medications than that of today. Yes the medication usually took the persons life.
There are truths and misconceptions. Some think for example a nursing home wants the patient to die? Why? Patients is how they operate even NPO's. The good news is many of the nursing homes as well knew them are not being used as much due too the idea of assisted living which means many who were nursing home patients 20 years ago are now assisted living and pretty darn independent with minimal help. While they can't maintain a home they can thrive there as a community.
I had to retrain or learn myself on that issue due to my sibling. My sibling 59 has onset of Dementia. The primary caregiver died suddenly from a massive heart attack and the grown kids were not suited to do care. One was out of stae as well and had medical issues. As well there was the reality of walking off from the homes so a secure facility was needed. My family comes to me to ask about such issues. They asked me about assisted living and I said I doubt it due to the need of 24/7 monitoring. I was wrong. My niece found one for Dementia. It's great. Granted a secured unit but great.
We did have some issues at first over nourishment. It seems somehow it got put in the records of a pre-Diabetic condition. The Dementia unit director insisted nothing like a hamburger, snacks, etc be brought in. They proceeded to begin a diabetic diet as well. We made a doctors visit and had a Blood Sugar test done one that can detect levels for prior three months no evidence of problems.
The facility Administration and my family had a talk. The administrator was on the same page as us. The administrator said they have had a lot of things taken from them. The last thing taken will be foods they like or rather the ability to eat. The administrators belif was if they can eat safely and enjoy their food let them have what they want. That is how it should be IMO and we did achieve that part. The administrator believed give them what they want and so we do.
I want too tell you about something else this happened many years ago in about 1980. I didn't see it but my wife did as a nurses aid workjing there and told me about it later after we had met. The administrator of the nursing home she worked at had a massive heart attack at work. The nursing home medical director also the county M.E. was there and began using all his skills trying for 45 minutes to keep him alive plus additional time in the ambulance till he got to an ER. He lingered two weeks hooked up too every modern support they had before his family said enough.
Now the doctor was a very compassionate and Christan man. He loved the patients as did the administrator he tried to bring back who had left orders in his will that certain acts of kindness he did in private for a few wards of state with no family be continued.
Anyway the medical director said he would never do that again for that long to anyone it was cruel. It's a matter of this man for all medical purposes had died. Bringing him back prolonged death and increased suffering. It was his best friend it happened too. His new orders were give all patients TLC. Unless requested by family no heroic measures. This was before living wills etc had become popular.
Medical science though many things discovered and increases in knowledge and technology has increased the wisdom has not. Machines can keep some people alive a very long time. Machines can breath and do the cardiovascular functions but the patient? Are they there? I don't mean a Vegetated State only needing feeding tube and hydration I mean a lot more extensive. How far do you go?
I lost my first wife when she was 23 to a massive heart attack. I was at work or enroute to work and she was going to ride to her moms with my dad on his way too work. She collapsed getting in the vehicle. Dad did CPR for about 45 minutes waiting for an ambulance but she was gone and pronounced dead in the driveway.
A few years later I became friends with a Paramedic. He told me he had seen this happen before and even had she been in an ER she would not have ever walked out but simply kept alive for days.
What is your experience within the Hospice field of nursing?
“I am not promoting euthanasia. Im promoting leave me and mine the Hell alone.”
Very well said. This is what the concept of conservatism is supposed to be about — the freedom to make our own choices and be left alone.
I am single, in my sixties, no children. It’s possible, no, probable, that I may approach my own end with no one to care for me or to make decisions on my behalf. When that time comes, I want the freedom to decide for myself how to proceed, assuming I still have a small amount of competency to make such a decision. I will -hope for- palliative care, rather than any type of heroic life-support in which I (or no one related to me) will have a say.
I might even prefer an “accelerated end” to a prolonged period of decline without hope or anyone to even visit by my bedside. One can label it “assisted suicide”, or whatever one wishes. Who is it to dictate to me that I must suffer uncontrollable pain in my last days and hours, because the choice of an alternative is called something else?
Again — Lurker, you said it exactly right.
By the way, I find the postings from others on this thread both moving and illustrative. Thanks for taking the time to write so eloquently of your loved ones and sharing with us your personal experiences.
Unless that choice is to deal with your own death in your own way.
Or if that choice is to smoke an unapproved plant of some kind.
Then people who claim to want small government conservatism get all kinds of liberal on you faster than you can blink your eyes.
Try not to take this personally.